Immune Suppressants, Anyone?

If the thought of having to get a transplant isn't scary enough, news stories always add one dreaded little detail, and that is whoever gets a transplant will have to be on immunesuppresive medications (aka immunosuppressants or anti-rejection drugs) for THE REST OF THEIR LIFE!

Having two types of DNA sounds like superhero stuff, something that maybe only an X-Man might have, but liver transplant recipients have it, too, and it causes us to have to pop a pill on a really regular basis. My transplanted liver and those little pills do make me feel a lot better, but not quite super.

So far, at one year out, I haven't had any reason to curse the little guys.

The liver transplant manual that I was given by Indiana University Hospital suggested taking the immune suppressants at 9 a.m. and at 9 p.m., and that is the schedule I have maintained. With regular morning visits to the Surgical Outpatient Clinic (SOPA) clinic a must, at least twice weekly during the first two months of post-transplant life, the timing worked out for me.

Before every clinic they want you to have a blood draw for some labwork. You do that down the hall from the Surgical Outpatient (SOPA) clinic at IU Hospital, near the front entrance. One of the three tests that become routine over the next few months is the one for the immune suppressant, FK506 (The other two are the CMP (Comprehensive Metabolic Panel or "Liver Panel") and the CBC (Complete Blood Count).

But it seems no matter how early you can get your blood drawn, the result for Prograf levels hardly ever in on time for the doctor to see it while you are being examined in the SOPA clinic. My nurse coordinator phoned me at first to tell me what my results were and if I needed to change my dosage. After a month or so she just emailed me to let me know how things are going concerning the immune suppressant.

Initially, and to this day, the immune suppressant of choice for me has been Prograf, which is the brand name of the drug. The generic name for it is Tacrolimus, but with four syllables people more often use the brand name with just two, no matter which one you take.

The pill bottle for the first month's supply that I was given upon discharge from the hospital was a big one, and it held 300 of the little capsules. The original prescription was for me to take five in the morning and five every evening. I hardly ever needed to take that many.

It can be a pretty expensive drug. When I asked my pharmacist how much my prescription (3mg per day) it would cost without insurance, $331 was the price quoted to me.

The number required to maintain my Prograf blood test numbers fluctuated at first (they wanted it in a range of 8-10), and it wasn't but a month or so after I was released that I was down to one-and-one, i.e. one 1mg Prograf capsule in the morning and one in the evening, usually at 9AM and 9PM. At six months out, they wanted my Prograf level to be in the range of 4-6, preferably closer to six. But of course, the desired range all depends upon the individual patient.

At times I have been told to take an odd number of pills, usually something like one-and-two, one in the morning and two milligrams in the evening. Taking two in the evening on the nights before the regular Prograf tests (FK506) would raise your Prograf level to what would seem to me a higher than normal or average result.

I have asked about half-milligram pills, they do exist, but I have never had any. While I do know some who take the half-milligram pills, I have been given various reasons for why their aren't commonly prescribed. I have been told that they are more expensive, that they are harder to obtain, and even that the doctors don't like working with fractional doses. So I never have had any, even though it would seem better to even out Prograf levels over the day with equal doses morning and evening.

While there are all kinds of long-term problems ascribed to taking immune suppressants, like skin cancer, osteoporosis and kidney problems, the only side-effect I ever had with them involved my feet and hands. Some say their feet and/or hands "tingle" and the effect gets blamed on the immunosuppressant, or so it was blamed in my case. I don't know that I ever really "tingled," but my feet seemed extraordinarily warm under the covers when sleeping at night and my wristwatch made the skin on my arm feel like it was burning. Whenever I put socks on there was a delayed effect of feeling like I had just rubbed my feet and lower legs with sandpaper. The sandpaper sensation didn't last but a few seconds. I was told that over time, as I became more used to taking the drug, that those sensations would disappear. And so they have.

I always carry a day's supply of medications, and have a little bottle with just the Prograf alone. I figure that it is the most important of all the pills that I need to take, and so I don't want to ever be caught without a supply. The pills are so small, you can put them in a little plastic bag or a small envelope and slip it into a wallet or purse. Walmart carries a nice selection of portable pill containers.

What if you forget to take your Prograf? My nurse coordinator has told me that after the 24-hour mark that there is not much of a trace of it in a person's system. I'll trust that what I have heard is true; the chances of rejection are not something anyone wants to risk.

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Intro

In 2015 I was fortunate enough to receive a liver transplant at Indiana University Hospital. My name is Philip, and I and many others can say that we are "livering proof" that the organ donation system does and can work for anyone, all due to the thoughtfulness of just one person, the organ donor. If you want to know more about what it is like to get a organ transplant in general or at University Hospital in particular, this is a place to discover more from one patient's perspective.